The biopsy on my legs came back positive for Livedo Reticularis but negative for any blood clotting disorders. My Ana also came back fine. SO the dermatologist thinks its safe to rule out Lupus. He is sending me over to a Rheumotologist to see what they can find. I sorta feel a little hopeless. He says the rash is a sign of an underlying illness BUT all my bloodwork so far checks out fine!
Thanks for listening, just thought I would update you!
I have a rash that my doctor says is Livedo Reticularis as well. It has never been checked by way of biopsy and I didn't think it could be. I have heard it is SOMETIMES a sign of underlying illness but also that sometimes it occurs with healthy individuals. Would you mind letting me know more about the biopsy process. Since it is not a rash that actually "pops up" on the skin, I am not quite understanding how they biopsy it? Mine comes when I am out in the sun or when it is cold. AND.....I would love to read what the Rheumatologist has to say as mine just brushed it off as insignificant! Thank you.
When I went into the dermatologist it was allo over my legs. He just picked a spot and tooka piece out. I needed two stitches. he said he was doing the biopsy to check for clotting disorders.
When he told me what it was and that their was no clotting issues, he said I want to test u for lupus. I than gave him my blood test that my Hemotologist took and thats when he saw that my ANA was fine.. BUT he also said...This is Livedo reticularis, now we have to find out whats causing it?? Thats when he told me to go c a Rheumotologist.
That is my worst fear...being brushed off???? especially since my ANA came back ok. I have had issues for YEARS and I was hoping this might put an end to my worring and not having anyone listen to me. We shall see?????
My Livedo is ALWAYS on my legs (gets bad when its cold) but I also have it on my forearms.
I have my Rheumotolgist appt. on Tuesday, I will let ya know what happens.
Momto, I'm only a patient, but I reacted exactly the same way to what your dermie said, per your first post. I thought testing for APS clotting disorder is via blood work, like the "sticky" on APS describes.
My livedo reticularis is transient, lasting only minutes to hours. It doesn't resemble a rash at all.
My rashes were biopsied multiple times, but haphazardly. I think a punch is always scrutinized by microscope. But the really useful step, on my rashes, was a 2nd stage of testing, in which immunofluorescent stain substances were applied to the skin punch. In lupus, these stains can often, but not always, light up in characteristic lines; this result is pretty much seen ONLY when the rash is a lupus rash.
But maybe the dermie actually did everything well but just explained horribly...?
Anyway, I hope you get clearer info from the rheumie you're seeing soon. I'm sure you're tired of feeling awful & hope you keep trying to get yourself some answers. That can be hard to achieve, I know... I'm rooting for you! Warm wishes, Vee
P.S. Regarding ANA, it's not the be-all & end-all. For starters, I think it can vacillate. Plus, some people with a lighter degree of lupus never turn positive. For example, I'm in a tiny subset called Ro-lupus, positive for anti-Ro but negative for ANA. Also, people with "discoid lupus" are mostly ANA-negative, I think. You could ask the rheumie to explain the limitations of ANA results.
Last edited by VeeJ; 10-23-2009 at 07:11 PM.
IDK VeeJ. He just said the biopsy confirmed Livedo Reticularis and than he said he was gonna test me for lupus. That is when I showed hime my bloodtest results, which showed my ANA was fine. Than he said... no lupus??
Can I ask a silly question???? How do I prepare for my rhuemie visit. I feel like I am in such a brain fog its not funny!!! My head is spinning with all this testing!!!
Momto, to prepare for appt, prepare lists. I kept my lists short & terse, only sentence fragments, to make them quickly readable. Make a copy too give to rheumie, and keep a copy for your own file. Some suggestions are
1. medical history. Could be by symptom (dates started, ended, recurred), or could be by dates, with symptoms. (Your choice.)
2. lab results (if you don't have copy, name/contact info of dr. who ordered)
3. brief family medical history
4. meds & OTC's you take now, or have taken. When started. When ended.
5. IF ASKED, have info on drs. you've seen & what they diagnosed. Some drs. don't want to hear what other drs. Dx'ed & get angry if you try to tell them! I usually let my new drs. ASK, rather than volunteering this info.
Because you're tired & foggy, if you can take someone along with you, that could help---for moral support & to help you remember what the rheumie says. I carry a small notepad to jot things down.
Hope this helps some. I know how it feels to see multiple drs. but not get answers quickly, so I feel for you. Hang in there and good luck! Hugs, Vee